COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...

Husband has RLD

After going to Mayo Clinic in Mn. and Barnes Hospital in St. Louis the doctors both agree that my husband has Restirctive Lung Disease. His FEV1 was 26%. When in St. Louis the Neurologist did 2 muscle biopsys and blood work to send to Duke University. He is looking for possible Pompe Disease but he still thinks it is RLD. He referred us back to Pulmonologist and he did another complete PFT. That doctor forced my husband to do as much as he could. He just can't take breath in. I could hear him from waiting room and I almost went in to stop the torture but I knew they were trying to get as much out of him as they could. They tried albuteral which was no use to him. It has been tried before with no avail. He has also been on advair and spriva which neither one helped. He told hubby that nothing is going to help him and live the best quality life he can.

We left very depressed. Hoped for some other answers but didn't receive any hope.

I had to take him to our family doctor today because of swelling in legs and feet. He of course gave him water pills and told him that he needs to live day to day and do the best he can. He told him he could live for 10 or 20 years and to enjoy them. It was hard to hear it but a relief to know that we have done all we possibly could. Now we just have to treat the symptoms that come along.

Can you share what we can expect as far as what will happen in the future? Any help would be appricated.

Nev,
I can remember many a PFT technicians I would like to have strangled!(ha/ha) Unfortunately it's their job. And I think some of them enjoy it. If they were only on the other end.

I two have restrictive lung disease and no kind of bronchial dilaters(albuterol,sprivia,advair,etc.) will be of help. I have found that Formoterol Fumarate(Foradil,brand name) does help some! With very little side effects!

It is a very uncomfortable disease and can be difficult to treat right! Don't let your husband get down though. That just makes things twice as rough! It's important to lay down when he needs to. Maybe several times a day. He will soon find what side or position is most comfortable to lay on and extra pillows always help. I also use alot of heat wraps around whatever side hurts the most. It helps to have pain meds but most doctors scare away from them, with this disease, because of the possibility of respiratory depression.

Hopefully others in this group, with the same form of lung disease, will be able to help you through this!
Take care!

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